This is an awareness month, right? So it should be quite appropriate that the post for the beginning of the month starts with next to no awareness! It’s hard for me to tell the story of my first Migraine because I wasn’t aware enough to notice it. I have had majorly dramatic Migraines, and many of them, but my experience didn’t start out that way. It was more of a series of maybes, and a gradually building awareness.

Maybe the 1st – #1: From around age 7 to 10 I had recurrent unexplained stomach aches, great hollow, gnawing, aching pain that wasn’t nausea and wasn’t cramps and wasn’t bloating or anything to do with digestion. The pediatrician was baffled. I worried that he thought I was faking. They disappeared without having been diagnosed. It wasn’t until at least 30 years later that I read about abdominal Migraines in children. Aha?

Maybe the 1st – #2: I was 14 and an adult friend had taken me and her son to a play in Manhattan. Riding the train home afterwards I remember laying my head back on the seat with heavy pain and pressure in my forehead, and saying “I think I have a sinus headache”. Again it was decades before I learned that most so-called sinus headaches (in the absence of a sinus infection) are actually Migraines. Aha?

First awareness? – #3: At 17 I had surgery at Montefiore Hospital in the Bronx (Exploratory surgery for more undiagnosed abdominal issues. Completely unnecessary surgery, as it turned out, for my earliest IBS attacks – another story for another time). Driving home, we passed the Montefiore Headache Center. It was 1976. The Headache Center was several decades old already – the first Headache center in the world, I believe. I asked my parents what they did in a headache center, and they said they assumed there were doctors who helped people with extremely severe and frequent headaches. I remember thinking, I will probably need that someday. So even though I don’t clearly remember a Migraine that occurred before that time, at 17, I already knew.

First naming – #4: In my mid-twenties I was in law school and working harder than I ever had before, under a fair degree of stress and sleeping irregularly. I remember one April 15 in the office of the law journal I helped to edit, my friends were trying to finish their tax returns and my head was pounding, I went into the bathroom to vomit, and I remember thinking “this is a Migraine.” I don’t know where I got that knowledge; I must have read something about Migraine. I do remember that the hideous sickness was familiar to me at that time, though I hadn’t always had a name for it. I commuted to school, and a friend gave me his dorm room key and let me go sleep the Migraine off in his room. From that time on they got more frequent and the serious ones, the throwing up in the street, tear my head from my shoulders, scream and cry ones, they started then.

Glad to get this written on the first, anyway. I will have to come back and link it on the second, or I will have a Migraine soon. Not a first, not a worst, and almost certainly not a last (more’s the pity), but one I can probably avoid by getting some sleep.

Four weeks ago I was one of sixty some-odd Migraine and Headache patients, physicians, and advocates of many kinds to spend a day and a half in Washington DC, lobbying Congress for research funding and recognition of Headache disorders.It was the Alliance for Headache Disorders Advocacy (AHDA)’s fifth annual Headache on the Hill (HOH). I participated in the second HOH three years ago and it was really inspiring to see how the group has grown in the interim. At that time I was one of very few non-physicians and very few bloggers. This year there were any number of patients, bloggers, advocates of many kinds, representatives of Migraine.com and Health Central, and NuPathe. Here we all are in front of the Capitol (I’m the short one in the orange coat):

As we tried to spread the message about how incredibly prevalent, disabling and costly these conditions are, we heard a lot of stories. Given that almost 20% of Americans experience Migraine, we discovered any number of legislators and legislative staff who either had Migraine themselves or who could tell us about how disabled their aunt, cousin, friend or coworker is by the condition. There was also a large group of Cluster Headache patients who came down to advocate for headache research. I was moved and amazed by these people who experience what is considered to be the worst kind of pain a human being can experience. Many of them were in the midst of cluster attacks at the time. We found that the legislative staff we visited had never heard of Cluster Headache. The condition is considered rare, but it is as prevalent as Multiple Sclerosis. You’ve heard of that, right?

We’re looking to have Congressional hearings into the impact of Headache Disorders. We brought our 11,000+ signature petition (if you haven’t signed yet, do it now please! Headache Impact Petition) and visited legislative aides and legislators from over 30 states. I went to the New Jersey Senators and several Congressmen with my friend, Rutgers Sociology professor Joanna Kempner, who studies the societal impact of Headache. I was moved to tears several times thinking of my sisters and brothers with chronic Migraine who could not be there – it was an honor to be able to represent you. Joanna and I told our stories, and we were able to see what incredible progress the two of us (both chronic Migraine sufferers) had made in the three years since we last walked the Hill together. (Joanna carried the torch for New Jersey by herself for the past two years when I couldn’t be there).

Here’s some of the information we conveyed to our legislators:

Almost 1 in 5 Americans will have some form of migraine this year.75% of Americans with episodic migraine are women – mostly of child-bearing age.

4% of Americans have headaches more than 4 hours, at least 15 days per month.

Among Iraq/Afghanistan war veterans, 37% of men and 57% of women reported ongoing migraine with a deployment history of concussive injury and a pre-deployment history of migraine.

Migraine increases the risk of cardiovascular disease linked to more than 1500 US deaths annually.

Headache disorders lead to more than $31B in economic costs in the US annually, exceeding the estimated annual US costs of epilepsy, asthma and ovarian cancer combined.

Migraine causes more lost years of healthy life in the US annually than multiple sclerosis, epilepsy, ovarian cancer, and tuberculosis combined,… whereas NIH research funding on these 4 diseases totals more than 38 times that for migraine in 2011 ($621M vs. $16M).

Cluster headache is reputed to be the most severe pain that humans can experience. More than half of patients have recurrent thoughts of suicide. Cluster headache is as prevalent as multiple sclerosis, yet the NIH has funded no research on it in the past 25 years.

NIH funding for all research on headache disorders was < 0.07% of the 2011 NIH budget ($21M).

Though it wasn’t on our leave-behinds, we also talked about the increased risk of suicide to all Headache Disorder sufferers. (I think sometimes our diseases don’t get taken as seriously because they are not considered to be fatal, but between increased cardio-vascular risk and suicide risk, I think they’re fatal enough.) In general we had sympathetic listeners in the Congressional aides we met with. Congressman Rush Holt (NJ 12th district) came in while we were meeting with his aide, and both of them gave us a very warm and interested hearing.

We’re following up, and results can take a while. In the meantime, please contact your legislators and let them know how you are impacted by Headache Disorders. We can make a difference.

Well, not literally. Not that it would be unheard of in the Migraine world, many of us have banged our heads at times when the beast has settled down upon us. It’s a kind of counter-irritant, I guess. Something, anything, to try to break the repetitive throbbing. Or a distraction, some surface pain to focus on instead of the hideous rending inside the head. I’m really glad I don’t have many Migraines that get that bad any more.

Last Monday I woke up after a rough night, sleepy and with a mild ache on the left side of my forehead. Technically I’m sure it was a Migraine already, but I thought of it, as I often do, as more of a maybe-migraine, a migraine wannabe. My first impulse (so often the right one) was to call in to work, take my sumatriptan and go back to bed. And then the thought entered my mind of the budget for the month, and of the sick leave hours I try to budget too, and how since my Migraines have become less frequent I sometimes have a little headache that doesn’t turn into a full-blown Migraine. So my little headache and I went off to work, and chose to focus on the less mentally taxing of the tasks on my desk, and did most of my thinking out loud to help me focus, and took a walk at lunch, and did all I could to keep the beast at bay.

But I was talking about head-banging. Which I wanted to do before the night was out. I got home and tried to focus on all the stuff I try to focus on after work, like visiting my on-line world, Migraine related and otherwise, and helping Adam manage his homework, and imposing some kind of order on the chaos that is my home, and trying to build up and work on some of my free-lance work, and I found all I could do was go take a sumatriptan and lie down.

I set the alarm for about an hour and a half, rolled a pillow under my aching neck and dosed off, hoping the pill would do its job. And woke up groggy when the alarm went off, groggy and in pain. Groggy and nauseous and hungry and in pain. It was not yet two hours from the time I took the triptan, so I couldn’t do another dose, and the pill had had no noticeable effect. So I had to wait 15 minutes or so, and I needed to eat something for my blood sugar which was dropping (contributing to the Migraine). The head had started throbbing, one of those times when I imagined I could specifically feel each dilated vein around my brain pulsing and stretching and shoving against my skull.

So did I hit myself upside the head? In a sense. I didn’t actually feel like head-banging this time, though it was the worst Migraine I’ve had for a few months. Probably about an 8 out of 10 this time, the kind that makes me cry. I knew I had to bring out the big guns this time. I had to give myself a sumatriptan injection. A highly effective way to abort the Migraine, but which I put off and avoid as long as I possibly can. Why on earth would that be, you ask? If you have to ask you have never had one of these injections, or you are lucky enough not to experience them the way I do. First of all the injection itself hurts. It’s a spring-loaded injector; you shove it hard against your arm and hold it there, pressing until it injects. It’s not a jab, it’s a SLAM-STAB, and you have to keep pushing that thing in for 30 seconds to make sure all the medicine goes in, I do it while breathing hard through my gritted teeth.

Then you need to take your sore and aching arm and get yourself prone as quickly and smoothly as you can, so you can be lying down as still as can be when the real head slam comes. For me, and I understand for many others, the injection causes a “surge” of increased head pain before it begins to work. So the only thing, sometimes, that will make the pain go away, is a short-term, extreme increase in the pain. When I say short-term, it’s not an agonizing 30 seconds like the injection torture. It’s a good five to ten minutes of the front of my head feeling like it’s being hit with a tire iron, from the inside.

The only thing that gets me through to the other side is lying on my back as still as I can, doing my relaxation breathing. I have to go into the pain, be with the pain, and visualize my breath carrying the pain away, out with each exhale. And eventually I fall asleep, and usually in that sleep the pain goes away.

This time it took a long time, almost until morning, before the pain lifted. If I’d followed my original impulse and taken a pill in the morning before the pain was much of anything, I probably wouldn’t have needed the injection. If I’d taken the injection right away when I got home I probably would have been pain free in two hours. But I couldn’t bring myself to hit myself upside the head. Until there was no alternative. If you’ve been there, you know what I mean.

Hello friends – I’ve been gone a long time and I’m so glad that (real) people still come by and visit Free My Brain. The needs of working and earning a living have gotten in the way of my blogging for a long time. There’s good news in that, in that I have been well enough to work full time, but bad news too as we continue to struggle economically and the stress level of my life remains high. Not to mention that I miss the wonderful relationships and the fun back and forth of the on line world. Ever since getting back from Headache on the Hill this week, and remembering who I am as part of this Migraine advocacy community, I have been determined to get back to Migraine blogging and coaching, even if just a little at a time.

With help from my resident tech-guru husband and at the recommendation of dear blogger friend Diana Lee, I am installing Disqus for comments, in the hope that real people will once again be able to talk to me, rather than spam-bots. (I hope Danny can get to it this weekend. He just started a new contract position Thursday so has been working on that, which has to take priority since it pays the mortgage.) Some of you have tried to leave comments and somehow haven’t been able to; I’ve had quite a few emails from my “contact me” page alerting me to something wrong with the comment function. Spam-bots don’t seem to have any trouble with it, though. I’ve gotten thousands of spam comments over the past year and a half or so. They were piling up in my comment moderation box, and several hundred even managed to spill over to the “approved” side though I sure as hell never approved them! I don’t know how that works, but I spent hours deleting them all over the last few days.

And so, just so those hours of purging will not be completely wasted, I wish to share with you some of the choicest cuts of spamminess – worthy of a Monty Python breakfast (spam sausage spam spam bacon spam tomato and spam).

The thing about the spam comments is they just manage to sound almost human, but not quite. At first I thought they were all written by non-English speakers, but if you are human and speak any language at all you have some grasp of syntax, which is notably missing here.

First, the marvelous compliments:

“Treasured… I totally wonderful this item!” (And I totally wonderful your use of English!)

“Excellent site. It was pleasant to me.” (So nice of it; too bad you weren’t pleasant enough to leave it alone.)

“Splendid… I seriously great this post!…” (Wow, and you seriously grate on my nerves!)

“Eloquent… Smooth rhetoric in this item. I wondered if I was reading Richard Nixon.” (Well, hey now, is that any way to speak to someone who lived through Nixon’s rise and fall? Not that he wasn’t eloquent in his lies, but I’ve surely never modeled myself after him!)

“Simply wish to say your article is as astonishing. The clearness in your post is simply nice and i could assume you are an expert on this subject.” (Sounds almost human, though to be astonished by something simply nice would require some kind of weird mental gymnastics. Maybe this was a real human after all and I should take in that I am simple yet astonishingly nice. Except not right now.)

“Great beat! I wish to apprentice while you amend your website. The account helped me a acceptable deal. I had been tiny bit acquainted of this your broadcast provided bright clear concept” (Yeah… I got rhythm…)

And just for the sheer nonsense of it, “Log Cabins Loch Lomond” contributed “Thanks erst much for distribution this on line. I sure every bit of it.” (Well, by yon bonnie banks and by yon bonnie braes! You’re welcome erst much! I sure… every um… what you said.)

But rest assured, I am not universally loved by spam-bots, some criticize me thusly:

“I can impartially state that I didn’t get it… Check out this gibberish… Do others think they believe it?” (And I can impartially state that you are pretty darn good at gibberish yourself.)

“Grow taller for idiots review. Another post of fail… Why do you even bother ?” (Indeed. Why do I even bother, when I grow taller neither for idiots nor for geniuses? Five foot two and a half ever since I was fifteen. Ah me!)

And just in case you were wondering “how to quit smoking pot. {Simply|Just} {want to|wish to|desire to} say your article is as {astonishing|amazing|surprising|astounding}. The {clearness|clarity} in your post is {simply|just} {spectacular|nice|excellent|cool|great} and i {can|could} assume {you are|you’re} an … (Multiple choice spam? I’ll have the spam spam spam sausage and spam!)

But perhaps the creme de la creme:

“Fleece Blanket. Funny Thing Happened… While I was flipping through the post, a cat just swallowed my pet ferret!” (In fact, fleece blanket, that would be sad, if you were a human with a pet ferret. Luckily, it is highly unlikely.)

Some of my dear bestest buddies from the forum over at My Migraine Connection were over at my house on Sunday, for reals! It was so wonderful having MaxJerz (and her Mom) and KatintheCorner in my own space. MJ was back visiting my state, where she grew up, after being gone for five years; she came up with the idea. Kat came down from her corner of the state and I picked her up from the train. We were sorry the timing was such that EG couldn’t join us from yet another direction. I also wish we’d thought to take a picture. My old standby heads-together statue will have to serve. I love this photo, though, it makes me think of Migraine sufferers helping each other – putting our heads together.

I always feel super responsible when I host something, and of course I was feeling responsible for our weather – it had been super hot, then thunderstormy, and I worried about everyone’s heads. Why do I think I’m responsible for the weather? The day itself was humid but not too hot, and overcast. All our heads held up well enough. Beforehand of course I cleaned myself half dead (and give credit where due – my Danny man did the same), but was worrying about all the things we hadn’t gotten to.

Everyone was so easy and natural it wasn’t too hard to give up my obsession to make things perfect and just enjoy being in their presence. It’s an amazing thing to meet people you know intimately, but have never been with before. It’s fun to just experience the way people move, their gestures, their voices, when your contact so far has been in words and pictures. And to give real hugs where you’ve sent lots of virtual ones before. People are great in three dimensions! It’s fun to be three dimensional too- to tell my funny stories and ham it up the way I like to. Can you all tell from this blog that I’m pretty goofy? (Yes, intelligent, well-informed, authoritative, but goofy.)

It was a quick visit, but a great one. I’ve gotten to meet lots of great Migraine buddies lately – been meaning to blog about the Migraine focus group I was in for the past month – I promise I’ll get to it soon. It’s a funny thing; it’s not that Migraine sufferers are all that unusual – we’re about 12% of the population. Even those who are or have been chronic Migraine sufferers aren’t that unusual, though we’re a minority of the Migraineur population. But those who are active on-line, are advocates, are seeking help and to help one another, we’re not your common or garden-variety. It’s an honor to be part of this community, and a pleasure to have you all in my own living room.

It’s ten o’clock on a Tuesday night and I have a little bit of a Migraine – one of those left-over ones. Left-over Migraine is not a clinical diagnosis, mind you. Just the way I describe it – had a nasty one Saturday and all day Sunday and then a bit of a sore-headed post-drome yesterday, which morphed back into a full-blown head-banger by bedtime. And here we are the next day still sore.

A few years ago this was par for the course, and I would have strings of days like this most weeks. Now I am very happy to say that most Migraines I get are mild and abort easily and resolve completely inside of a 24 hour period. Of course whenever there’s an exception, like this week, I get afraid that this will be the new normal – that my chronic days will return. That’s one of those moments when I have to thank my fears for sharing and move on. Get grateful, recognize how far I’ve come, and let go.

So the good news – it doesn’t happen to me often these days. The bad news – I have a harder time taking it seriously and really stopping the action and taking care of myself than I did when it happened more often. Of course, other things have changed, too. Instead of being not very gainfully self-employed I now have a 3/4 time job and work on building a private mediation practice in the other theoretical 1/4 of my time. (It’s theoretical because… with fibromyalgia, episodic Migraines, extremely strained finances, a job-seeking husband and a teenager with ADHD, a dirty house to try to keep somewhat on top of… I ain’t got much time!)

I’m still not all that gainfully employed, but I’m glad to have a job. I went in a pretty short time span from being semi-disabled to being almost the sole support of my family. Times are tough. I can relate to the many Migraine sufferers I have interacted with through the years who say “I don’t have time to be sick.” I can dig it. I’m there. I can only work as much as I do because I have gone from chronic Migraine back to episodic Migraine, but I do worry that the level of stress in my life is such that I could get kicked over into chronicity again. (I don’t care if that’s not a word – I like it anyway.) So… I meditate. I take walks. I pray. I put everything aside and just relax. I practice my affirmations. I get up in the morning and get on my happy face and face another day. Keep putting one foot in front of another and doing the next right thing.

I actually came on here tonight just to say, I wish I had more time to blog. To read and comment on all my beloved chronic pals blogs, and post on My Migraine Connection, share on line, and all that. I had over 200 comments waiting for me here, over 180 of them spam. I haven’t found the time to install the stronger spam filter that the fabulous Diana Lee recommended to me. I haven’t found time to reply to the many people who went on the contact page and asked me if I’d like to do a link exchange (yes, yes, no, yes, maybe, let’s talk…), or asked me if I want to hire them to do SEO for me (no, no, no, leave me alone, don’t you think I have my own people to work on that?), or asked me for advice (oy vey).

The good news is life does go on. I am so glad to be down to an average of 2 – 3 Migraines per month. This is huge. There’s a whole lot of living that can fit around 2 – 3 Migraines a month. I wish that living didn’t happen in the midst of a whole lot of economic hardship, but how much worse it would be to be sick like I used to be and going through this. So I guess I can put up with a left-over Migraine, for now.

I’m coming late to the party. It’s 3 days after the official Love Beats Hate event and I haven’t even managed to read very many of the posts – I’m working on it. But I figure keeping the love alive is not a bad thing to do. And I want to be part of the party.

What can I say? Perhaps nothing that hasn’t been said before. I love you bloggers and online health activists and I am honored to be among you. I was a busy person living my life when illness tackled me and brought me down. Life threatening allergies. Chronic Migraines. Crippling fatigue, which resulted many years later in a diagnosis of Fibromyalgia. Irritable bowel syndrome, with weeks of enervating stomach pain. On the hate side, I can truly say that I hate being sick.

I can feel very very sorry for myself. Even making this list brings a tear to my eye. But it’s not just the illnesses. It’s the years I spent fighting, not accepting, pushing myself way beyond my limits, thinking of myself as lazy and undisciplined, longing for the day when it would be all better. I neglected the people I love with my head in the clouds trying to build a different reality than the one I live in, trying to force the outcomes into a shape I wanted. I never paid enough attention to where I was, to my home, my children, my work. I thought that if I kept pushing, somehow I could make it all better. I regret those years. I listened to those who think that illness is a result of wrong thinking, that we can transform our way out of illness. I will not say that there is an evil intention in this type of thinking, but it led in my life to evil results. I felt guilty for my illnesses. I hated my illnesses, and myself for having them. I tried to ignore them and push past them. Until I was too sick to do it any more. And I finally found some doctors and therapists who could help. I recommitted myself to meditation and conscious relaxation, acceptance and love, and learned little by little to accept the highly sensitive, aching weary frame that I live in.

Three years ago I started participating in the online Migraine community, and then the larger chronic illness community. I had something to share, to offer, with the relaxation techniques I had learned, and the coaching skills I used professionally. I decided to create this thing called Migraine management coaching, and to go talk to others with my illness. I won’t say I haven’t had a contribution – I think and hope that I have. But what looked at first like a side benefit – the outstanding relationships I was forming with others who understood my life – turned quickly into the main event.

The darkest days of chronic Migraine, among the sickest times in my life, were lightened by the time I spent on My Migraine Connection, and blogging, and reading and commenting on others’ blogs. I became a part of a community, a loving, supportive, funny, vibrant community. I got such deep and caring help with some of my hardest struggles.

Then I discovered Facebook and a surprising thing happened – my chronic illness community and my other communities – family, friends, colleagues from the many parts of my life, all began to come together. When I post about pain or illness, many will comment who understand and are with me in the experiences, but the others in my life will also express sympathy, distress, let me know they are with me too, though they may not have my same issues. It has been enormously healing. I want to say I am sorry to all those I love, and who love me, who I neglected, or pushed away, or tried to force into seeing things in a particular way. I was running away from myself. It wasn’t until illness brought me to a standstill, until there were no more reserves of energy to keep pushing, that I became able to accept, and out of accepting, express, and explain, and have you get what my world is like.

After three years of working at it my Migraine disease has moved from chronic to episodic and I have long stretches of freedom from pain in the brain. I am back working full time, or close to it, at law and mediation. I wish that I could just help chronically ill people full time, but I had to get back to earning a living. I am exhausted by my work and can’t seem to think much at the end of a long day. My fibromyalgia and irritable bowel are activated much more often than they used to be by the stress and exertion of my life. So I don’t spend nearly as much time on this blog, or on forums or other blogs, as I used to. I miss it. I wish I could do more. But I do check in with my friends, on their blogs, on Facebook, on Twitter, and I am present every day to how I get by with a little help from my friends. I am lifted up and cradled by you. I love you.

My CPU is messing up its P. My wires are crossed, frayed and fragmented. The volume knob on my pain processors is broken and they don’t make the replacement part. There’s a bug in my programming that no one knows how to debug. I am exquisitely sensitive. I want to know what’s so freakin exquisite about it?

I spent the afternoon in the courthouse on Thursday. That’s always been a stressful event for me, and in years past it used to steal my sleep the night before, have me so riled up I could barely think clearly, and inevitably led to a Migraine after. This time was not so bad. I really knew my stuff, I slept well, though not quite enough, I was only a little nervous. I spent the entire afternoon negotiating and wound up with a better than expected settlement for my client. It was still rather stressful and quite strenuous for me, though. I was too busy at work to get a break before I had to leave for court. The street I usually turn down was blocked off for construction. I parked 4 blocks from the courthouse and then got a little lost on foot, hauling my heavy file in a stiff wind. I was worried that my plenty-of-extra-time was turning into actually being late. I had to deal with heavy opposition and guilt-tripping at times from my adversary, and a major upset at unexpected details from my client. We were racing to get our agreement done before the courthouse closed. When I left I practically ran to my parking garage to avoid a ticket. All in all a very tiring day.

The good news is that my Migraines are well enough controlled that all that did not trigger one. I was close this morning but my cup of tea and morning supplements seemed to head it off. But by the time I got to my car on Thursday my arms were so sore and heavy I could barely hold them up on the steering wheel. I went home, had dinner, and my gut immediately began to cramp, leading into a two day irritable bowel attack. And throughout the day on Thursday and Friday, my hands were trembling constantly. When I got up on Friday my whole body felt like very sore and achy concrete. I told my husband I had great sympathy with concrete; I know how sore it must feel. He told me, “Yes but concrete doesn’t try to move around!”

I am one of those Migraineurs with a lot of related “co-morbid” neurological conditions. Migraine is a condition of an over-sensitized nervous system, with mis-firing of certain neurons in response to certain stimuli. Fibromyalgia is like the sound has been turned up on pain receptors so that pain and tiredness amplify and continue in the muscles with long-lasting pain, it is also a condition of over-sensitive, over-active nervous system. Irritable bowel syndrome is thought to be the result of overactive nerves in the intestinal tract, and causes me days and even weeks of cramps, stomachache, heartburn and constipation. I also have a benign familial tremor – benign because it’s not Parkinsonian, familial because it’s hereditary. (my Dad has it but his didn’t appear until his 60′s – lucky precocious little me!) I don’t know much about the science of the tremor but I notice it is strongest when I am tired and stressed. Oh and for years I have had anxiety, severe at times, though that is being well controlled now by one of the Migraine preventives.

I want to be de-bugged, that’s all I can tell you. The past few days have felt like one of those cartoons where the robot starts to explode, spinning wildly, blowing sparks out of its top and sending bolts flying. The things that are wrong with me – they are not just painful, debilitating, annoying, disruptive, and gross, they are also just plain weird. I never know what’s going to blow next. Well, actually I do have some idea, but it’s awfully hard to manage it all. I am sick and tired of being exquisitely sensitive. I can tell you, there’s nothing exquisite about it.

Have you heard the news? Botox has been approved by the FDA for treatment of chronic Migraine. I first heard it from Diana Lee at Somebody Heal Me, but it’s been in the press this past week. This is great news for many chronic Migraineurs. Health insurers who have been refusing to pay for the highly expensive treatment will now lose the excuse that it is not a standard, accepted treatment. The FDA approval probably doesn’t guarantee they will cover it, but makes it much more likely. Like most Migraine treatments, Botox doesn’t work for everyone. As I understand it, for some Migraineurs, the injections into specific points in their heads and necks paralyze muscles that otherwise would contribute to the triggering of Migraines. With FDA approval, the treatments will be available for a much larger group of sufferers.

I guess some jokes are inevitable. Just for the record, the injections are highly unlikely to be into the same spots in your face that would plump up wrinkles, unless you just happen to have a wrinkle on one of those trigger points. Sorry. But I just ran across someone joking about it, and it got my goat.

A friend of mine who is a M.D. and has a great understanding about Migraine, has been very supportive of me, and also happens to work in a company that manufacturers dermatological products (so you could see she has some professional interest in the topic) posted a link on Facebook to the FDA approval of Botox. I commented that it was great news. Another friend of hers (who I don’t know) commented after me, saying “suddenly, I feel a headache coming on. sign me up!” Okay, I don’t know if this woman is a Migraineur or not and I don’t want to go off half-cocked, but it put me on slow burn. First I kind of shrugged, then read it again and was annoyed and gradually I’m getting that agitated feeling in my stomach… that could lead to a Migraine, among other things.

I’m trying to get at my feelings. The implication that I read there is that it’s a joke that you could get Botox for a “headache,” that people should fake headaches in order to get cosmetic Botox treatments. It trivializes our condition, maybe completely unknowingly, but even so. I was inclined to let it go so as to not drum up trouble, but if I don’t take on an opportunity to educate, I’m not being true to myself. So I’m going to answer her. If you’re reading this post on Facebook, I already have.

Of course I’d love to really let loose, but I want to educate, not alienate, so here’s what I’m saying:

Migraine disease is a serious neurological illness which is one of the top 20 most disabling conditions world-wide. Chronic Migraine sufferers have Migraines 15 or more days per month. For some of us, Botox helps prevent or lessen the impact of some of the Migraine attacks. The Botox is not injected in places that would help anyone with their wrinkles. It may be surprising, or sound strange, but it’s not a joking matter. I don’t think you intended to offend, but please understand that your comment trivializes a very real disease suffered by 36 million people in the USA alone.

I am counting on some of you old hands at living with fibro to chime in on this one, okay? I believe I have had fibromyalgia for at least 15 years, and maybe for 35 years. I’ve only been diagnosed for a little over a year, though. My fibro seems to have grown a lot worse in that year as well. What I can’t tell is whether the fibro just seems worse because my Migraine disease has gotten so much better that I can actually notice the fibro now.

I think it is worse, though. Certainly the fatigue is nothing new, that’s a fifteen year old problem, which I thought was ME/CFS. It was raising the question of dealing with Chronic Fatigue Syndrome (CFS) with my headache specialist last year which led him to press my fibromyalgia tender points, and led us both to realize that it was fibro that was the issue. since then things I’ve been experiencing for a while have “clicked,” like how a slap on the shoulder or the teasing pokes my son gives me can really hurt, for a long time. Things that used to be just mildly uncomfortable or unpleasant cause actual pain now. What is new is the feeling that my aching arms weigh a ton and are likely to fall off. This is after a day of sitting up at a desk typing.

I’m finding this disease a hard one to learn to manage. I try to keep my activity level fairly steady from day to day, but if I do get a flare I need to rest for it to go away. Then I’m back to a very inactive state and have to slowly build up all over again. I always want to do many things when I do have the energy for them, but I can cross the line to overdoing so easily.

Saturday, for example. A couple of our dearest friends were in NJ/NY for the weekend – in from Minnesota. It gave us the impetus to do a deep cleaning of the downstairs – one it had needed for a long time. But the day started at 6:30, because Adam took the PSAT today, and then we cleaned for several hours until they arrived. We had lunch and lots of talk, a too short wonderful visit of a few hours. I did take a nap after they left, but as the sun was starting to go down I was seized with the desire to be outdoors in the bright chilly Autumn day, and walk in the park. (What’s the good of living in the best spot in our little town if I don’t get out and enjoy it?) So I took a good 20 minute walk through the paths in the fields. Then I sat on the bed, propped up on pillows, blogging. There was still laundry to be done but I had expended about as much muscular effort as I should for one day (if not more). I ached a bit, but who knows how much more would have set up a flare? It’s very challenging.

You will also receive a subscription to the Free my Brain Migraine Management Newsletter.

We take your privacy seriously. We will never share your information with anyone

First Name:

Email:

That disclaimer thing...
Remember: nothing we do here is medical advice or treatment or is a substitute for medical advice or treatment. Get competent medical advice to learn more about your migraines, possible treatments and risks.